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Abnormal thirst and chronic bladder issues

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by bleusky, Mar 7, 2013.

  1. fava

    fava

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    Dear xchocoholic,
    thank-you again for your effort in my favour, I'll google 'low oxalate diet' and 'paleo low ox diet'. But I have the last question, if you can: I don't understand what GFCFSFCF and FOS are. Explication would be very appreciated
    See you,

    Fava
    merylg likes this.
  2. Hip

    Hip Senior Member

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    I don't have the book, just have what Google shows of it.
  3. fava

    fava

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  4. Hip

    Hip Senior Member

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    My idea, though, is that if you do have an L-form kidney/UTI infection from some bacterium, then perhaps you may also have a normal version of the infection with that bacterium in your gut.

    Thus if you perform a digestive stool analysis with a good quality lab like Genova Diagnostics, and learn which bacteria you have in your intestines, then perhaps one of these same bacteria may have created an L-form infection in your kidneys/UTI. That is just my own idea.
    merylg likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    The Paleo diet is the same as the cave man or hunter gatherer diet. It basically means that foods that can't be obtained via hunting or picked and eaten immediately without cooking or processing should be avoided. This makes these foods bio available. I prefer Cordain's info on paleo. His info in on the web or you can buy his books.

    I'm on the paleo diet and the low oxalate diet.

    gfcfsfcf = gluten free casein free soy free corn free. These are common food intolerances since they're most prevelent in one's diet if they're eating the standard american diet (sad). Which is mostly processed foods.

    FOS is a prebiotic.

    http://en.wikipedia.org/wiki/Prebiotic_(nutrition)

    Dr. Terry Wahls explains leaky gut and food intolerances on her website and in her videos. Dr. Weil has an article on this too. He's an integrative doctor.

    There have been a lot of studies on the effects of diet on autistic kids but these results can be appropriate for anyone. This site may help you. This link is for the diet section but check out the rest of the site.

    http://www.autism.com/index.php/treating_diets

    hth ... x
    merylg likes this.
  6. fava

    fava

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    Dear Hip,
    sorry for my delay, thank-you very much for your precious suggests. My sister will do CDSA/P. Please, keep in contact.
    Happy Easter, good holidays.

    fava
    merylg likes this.
  7. fava

    fava

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    Hi,
    sorry for my delay, thank-you very much for your precious answers.
    I' ll study your suggests!

    Happy Easter, keep in contact

    fava
  8. Hip

    Hip Senior Member

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    I am pleased you found the suggestion helpful.

    I myself have both overactive bladder, and also a chronic kidney/UTI infection. Approximately once every month or so, my kidney/UTI infection will flare up for a few days: during these days, I become much more fatigued, my ME/CFS symptoms become worse, and I also get a bad smell in my urine.

    However, when I sent my urine sample (taken during a flare up) to be analyzed, no bacteria were found. So this makes me think that I have an L-form bacterial infection in my kidneys or bladder, because L-form bacteria are not detected by a normal urine test for microbes.

    When I performed a digestive stool analysis, the bacterial species found in my stool were: alpha hemolytic Streptococcus, gamma hemolytic Streptococcus, Staphylococcus aureus, Proteus mirabilis, and hemolytic Escherichia coli.

    I suspect that, in my case, it is L-forms of either Proteus mirabilis or Escherichia coli that is causing my chronic kidney/UTI infection. This is because Proteus mirabilis and Escherichia coli are two bacteria that are known causes of kidney/UTI infections.

    If you look at the causes of urinary tract infections, you see that the bacterial species involved are usually: Escherichia coli, Staphylococcus saprophyticus, Klebsiella, Enterococcus, Proteus mirabilis.

    So my idea is that you perform a digestive stool analysis, and look to see which bacteria in your intestines are also common causes of kidney/UTI infections, and then I would think these are the most likely culprits for your kidney/UTI infection.

    (Note: this is just my own idea on how to identify the most likely culprits for your kidney/UTI infection; whether this approach is really valid, I am not sure).
  9. xchocoholic

    xchocoholic Senior Member

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    So far my utis that required a doctor's visit and antibiotics have been from e coli. I get calcium oxalate kidney stones and suspect my utis are connected to this. The low ox diet is helping this consistently. Using probiotics may help but not alone.
    I read something interesting about e coli recently but I'm drawing a blank. Rats ...

    My cdsas have been clean for bad bacteria except when I had h pylori. Tc .. X
  10. Hip

    Hip Senior Member

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    Escherichia coli is by far the most common cause of UTIs, I understand. Escherichia coli is the bacterium that the sugar D-mannose helps get rid of. D-mannose prevents Escherichia coli from sticking to the walls and cells of the bladder and kidneys, so that the bacterium is flushed out.

    However, when I tried D-mannose, it made my recurrent UTI flare up, rather than diminishing it.


    The best thing I found for my recurrent UTI/kidney infection is horsetail herb (Equisetum arvense). Horsetail is a classical Greek and Roman treatment for kidney infections.

    I used to use the antibiotic trimethoprim to keep my UTI/kidney infection at bay, but my infection would always come back soon after I stopped taking trimethoprim.

    Probiotics were very helpful fro me: I noticed these significantly reduced the occurrence of my UTI/kidney infection flare ups.

    But by far the best treatment I found for my recurrent kidney infection is horsetail herb. Provided I take horsetail herb once a day, I never get any recurrence of my UTI/kidney infection. I currently take NOW Foods Silica Complex 500 mg daily, which is based on horsetail herb. But if I stop taking this, my UTI/kidney infection comes back after a while.

    I think the reason I cannot get rid of my kidney infection is because the bacteria have converted to their L-form, and thus live inside the cells of my kidney. Living inside human cells in this way protects bacteria from many antibiotics, and from the immune system.

    What I want to do soon is try the L-form bacteria antibiotic protocols listed above, which I hope might eliminate my kidney infection for good.
    merylg likes this.
  11. LaurelW

    LaurelW Senior Member

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    I have had this problem in the past when I ate a very low-salt diet, and it went away when I raised my salt intake. I know this is more complicated in ME/CFS, but, it's something to think about.
  12. xchocoholic

    xchocoholic Senior Member

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    Hip

    Thanks for the D-mannose, horsetail herb and L form bacteria info. I haven't tried D-mannose yet and I'm curious as to why it made your uti worsen.

    Have you tried the lox oxalate diet yet ? I only avoid the foods highest in oxalates, esp nuts, and it's been working for almost 5 years now. Attempts to get off this diet have proven that I need it.

    The reason I started the low ox diet was from getting 3 kidney stones in a row back in 2007-8 but to my surprise it eliminated my pelvic pain too. :) People like me with leaky gut can have a problem processing oxalates. This diet has become popular in the autistic biomed circles (DAN - Autism Research Institute / Defeat Autism Now) due to the prevalence of leaky gut.

    So far, kow, avoiding high ox foods, esp nuts, is keeping my bladder and pelvic region happy. Research on oxalates and pelvic pain can be found online. I "think" The Vulvodynia Foundation was the first to publish this info. I "think" they're also the ones that found the B6 + magnesium connection.

    There is a bacteria, o. forminges which breaks up stones (maybe just the oxalate part), that has shown to be non existent in those who have kidney stones. From my last research, 2 + years ago, attempts to successfully replicate this bacteria outside of the human body to make these available for purchase have failed. I've recently seen info on the trying low oxalate board about other forms of good bacteria that break up oxalates also but I haven't taken the time to verify it.

    For several years, if I wanted to cheat and eat a few high ox foods, I'd take AZO w probiotics twice a day. And 250 mg Solgar B6 and 2 Doctor's Best chelated magnesium tables. But with my recent history of pyelonephritis caused by 2 kidney stones simultaneously I'm not even trying this.

    tc ... x



    .
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I agree with this. My own doctors were entirely useless when I went to them with excessive urine production (polyuria) and thirst. That includes the consultant. I did end up getting significant discomfort in the bladder, probably due to the muscles being exhausted by repeated filling and emptying. My thirst was due to the excessive fluid loss, but doctors persisted in claiming that it was the other way round - that my polyuria was due to 'primary polydipsia' - excessive fluid consumption. A few internet searches will find medical claims that this is common in 'anxious middle-aged women.' Does this psychologisation ring any bells...?

    Anyway, the drug desmopressin has largely solved the polyuria for me, along with drinking fruit juice instead of water. It is probably as good as unnatural, expensive branded drinks, if not better. Have a look here for the nutritional composition of apple juice, for example:

    http://www.foodcomp.dk/v7/fcdb_details.asp?FoodId=0337

    I also take cranberry juice tablets to keep infections at bay. Dehydration is also likely to increase the risk of urinary infections.

    Re Palaeo diets, humans have been cooking food for a very long time, including during the Palaeolithic, so I don't think you need to exclude things that need to be cooked.
  14. xchocoholic

    xchocoholic Senior Member

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    MeSci

    HI there .. When I said that the paleo diet just means that it's what a caveman would've eaten because what they ate COULD be eaten raw, I didn't mean to eat raw foods. Just foods that are considered bio-available. It's because our bodies can recognize these as foods unlike the heavily processed foods most people eat. Raw paleo and paleo aren't the same.

    Personally, I like what Dr cordain has to say about the paleo diet. Dr. Wahl's is good to tho imho. Dr. Myhill recommends this diet to her pwcs too.

    fwiw, as of Jan 2013, I'm no longer strictly paleo. I tried it for 5 years but I have chronic hypoglycemia, petite mals, etc and never could stabilize my blood glucose. Sugar or dextrose tablets are working better for me now. I've put on about 20 lbs eating grains, sugar, etc tho ... :aghhh:

    tc .. x
  15. nanonug

    nanonug Senior Member

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    I am curious, how was diabetes insipidus ruled out? How much does she pee in every 24-hour period? If it is more than 3 litters/day, it could be diabetes insipidus. However, it could also be primary polydipsia... Is she in the US? If she is, I'll be able to recommend the right tests to perform.

    Note: I have central diabetes insipidus. See this thread here: On Life, Liberty and the Pursuit of Hot Chicks.
  16. nanonug

    nanonug Senior Member

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    Care to elaborate?

    I did a 12-hour (overnight) food and water fast. Then, in the morning, measured plasma osmolality (slightly above normal), urine osmolality (below normal) and plasma vasopressin (undetectable by lab!) The two abnormal osmolalities and, in particular, the total lack of vasopressin, clinched the diagnosis.
  17. xks201

    xks201 Senior Member

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    When wete you diagnosed? Is the fatigue and pots resolved?
  18. xks201

    xks201 Senior Member

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    Also what's the dose of desmopressin you guys are using?
  19. nanonug

    nanonug Senior Member

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    I got my official diagnosis just this past Thursday (April 4th). Desmopressin resolved the orthostatic intolerance issues and other assorted problems related to hypovolemia such as conusion, inability to focus my eyes, that kind of stuff. However, it did not resolve mental fatigue/cognitive impairment. I am current experimenting with galantamine in an attempt to adress this. Look at my thread referenced in a post above for additional background info.

    I take half a 0.1mg tablet (~0.05mg) one hour before each meal (breakfast, lunch and dinner) and 0.1mg immediately before going to bed. This way, I end up drinking a very normal 3 liters of water a day (for a male) without gaining or losing water weight. I am waiting for additional blood test results to determine if I need to tweak the daily dosage.
  20. Hip

    Hip Senior Member

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    That is interesting. I have not tried this diet, as I thought the low oxalate diet was just for kidney stones, but from what you are saying, this diet seems to have broader benefits.

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